Since there is a new "sister" in this ACC fight, I thought I would save her some time reading through my numerous, lengthy, sometimes stuid, sometimes whiny, posts and just write some facts about ACC as I know them. So Karen, here it is in a nutshell.
ACC in the breast has a way better prognosis than ACC in the salivary gland. Do not get the two confused.
The reason, doctors say, is because the chances of getting clear margins in the breast are way better than in the neck area. The most important thing as they get all of the tumor. My tumor was so big that I had to had a mastectomy.
PET/CT scans are the best way to see if it has spread. However, PET scans don't pick up slow growing cancers very easily so the CT is important.
I was never told the GRADE of my tumor. I would ask if you can. Stage is interesting--just basically goes on size to tell you the truth.
It isn't likely that your tumor has gone to the lymph nodes but I still recommend a sentinel node biopsy.
I was going to have a lumpectomy but when they couldn't get clear margins I had the mastectomy. I 100 percent recommend the mastectomy--radiation might work but getting the tumor out is the only way to go.
I "googled" "adenoid cystic carcinoma of the breast" at least 2938597934 times. I learned a lot. Much of it very positive. But there are no guarantees with ANY cancer. But the odds are better with this cancer for the most part.
Chemo does NOT work on this cancer and if you have a doctor who tells you otherwise, ASK for the research that shows that it works. There is none. Chemo is nothing to take lightly.
My biggest fear is lung mets. That is where the cancer will typically spread. Most likely, it hasn't. So far, my lungs are clear.
I see my onco every six months.